Latest / Tom's Hirschsprung's Podcast / Episode 57 - With Sherry Maavich

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Episode 57 - With Sherry Maavich · Tom's Hirschsprung's Podcast

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  Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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  Speaker 1: a look into the remarkable experiences of the most inspiring
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  Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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  Speaker 1: episode fifty seven of Tom's Hirshprung's Podcast. I have Sherry
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  Speaker 1: with me today and we're going to talk about what
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  Speaker 1: we're going to talk about, Hirshprungs. We're going to talk
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  Speaker 1: about your story and various various medical studies you've been
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  Speaker 1: involved in as well. So that should be a very
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  Speaker 1: interesting story to be told. And welcome to the podcast, Sherry.
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  Speaker 2: Hi, thank you for having me. I'm looking forward to.
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  Speaker 1: It V too, V too. It should be a very
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  Speaker 1: a very interesting one. We'll start, if I may sort
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  Speaker 1: of from from the very beginning, because you were operated
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  Speaker 1: on by a very very famous doctor in doctor Everett Coope.
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  Speaker 1: Would you like to just sort of explain a little
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  Speaker 1: bit about him.
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  Speaker 3: Well, first of all, we got to him because my
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  Speaker 3: surgeon in Elkton, Maryland, which is between if you looked
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  Speaker 3: on me at between Baltimore and Philadelphia, and my surgeon
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  Speaker 3: had gone to medical school with Cee Everett Coop and
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  Speaker 3: when he was just a general surgeon and when he
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  Speaker 3: really didn't feel like he could treat me, and they
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  Speaker 3: were deciding where to send me because there are a
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  Speaker 3: lot of options in the north east of the United States.
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  Speaker 3: He said, you know, I went to school with See EVERYT.
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  Speaker 3: Coop and he's one of the very few pediatric surgeons.
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  Speaker 3: So my mom just took his advice and doctor Fisher
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  Speaker 3: called him and that's how we got.
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  Speaker 2: To Philadelphia Children's Hospital. Now, the one thing that I want.
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  Speaker 3: To say about see Everett Cooper is he was really
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  Speaker 3: sweet to my mother. My parents got married very young.
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  Speaker 3: My mom was sixteen. I was her oldest. She had
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  Speaker 3: turned nineteen two weeks before I was born, so very
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  Speaker 3: young mother. And when she had me in Elpton, they
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  Speaker 3: were in the hospital a couple of days and then
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  Speaker 3: that's when it all started. But he was really sweet
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  Speaker 3: to her. He really explained things in ways she didn't
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  Speaker 3: that she understood. He drew her pictures and one of
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  Speaker 3: the things he said, after he got done examining, he
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  Speaker 3: came out and he says, you know, missus, privet, there's
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  Speaker 3: two kinds of babies that come to this hospital. Babies
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  Speaker 3: that are gonna die, in baties, we can help, and
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  Speaker 3: I can help your baby. That was huge for my mother,
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  Speaker 3: and he just he took her every step of the way,
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  Speaker 3: even before they did the colostomy surgery. He took her
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  Speaker 3: in and showed her babies with colostomy so she wouldn't
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  Speaker 3: be surprised when I came out.
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  Speaker 2: Oh wow, yeah, I mean, he.
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  Speaker 3: Just really did things back then that was not done
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  Speaker 3: Like I was in a semi private room with fifty children.
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  Speaker 3: Fifty babies was a semi private room in nineteen sixty four.
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  Speaker 3: So and then I know that he took apart Siamese
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  Speaker 3: twins that were connected all through from the chest down
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  Speaker 3: to the abdomen. And then later on he became our
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  Speaker 3: surgeon general in the eighties. Yep, he lived a long life,
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  Speaker 3: and I know that he really did a lot in
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  Speaker 3: the pediatric world long before that was a thing. And
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  Speaker 3: a nice little story here. He told my mom in
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  Speaker 3: nineteen sixty four that one day the insurance companies were
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  Speaker 3: going to run medicine.
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  Speaker 1: So not only was he a pioneer but also a
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  Speaker 1: visionary as well.
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  Speaker 3: Yes, wow, because my mom said that to me a
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  Speaker 3: couple of years ago. Doctor Cook told me this is
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  Speaker 3: where medisine was heading. My mom just always felt like
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  Speaker 3: he was a really good man and he.
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  Speaker 2: Could be trusted. Yeah, so he was very very good
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  Speaker 2: to the parent of the patient.
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  Speaker 1: Absolutely, and I mean he was, I guess and in
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  Speaker 1: the research I did on him as well that anyone
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  Speaker 1: can sort of find out there was. He was a
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  Speaker 1: pioneer in a lot of different ways as well. It
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  Speaker 1: wasn't just in chill hospitals, in sort of children's wards
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  Speaker 1: and in operations. He was sort of very much against
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  Speaker 1: things like tobacco and smoking very early, much early nineteen
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  Speaker 1: eighty eight. I've got it down here back sort of
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  Speaker 1: when again we probably didn't know as much as we
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  Speaker 1: know now when it comes to tobacco and smoking. I
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  Speaker 1: saw that he's in his particular I don't want to
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  Speaker 1: call it constituency the hospital. He got smoking rates down
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  Speaker 1: from thirty seven percent to twenty eight percent, which which
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  Speaker 1: again in those times would have been would have been enormous.
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  Speaker 3: Yes, yes, yes, he's definitely. I definitely grew up in
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  Speaker 3: smoking was just everywhere. Yeah. Yeah, you know, kids today
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  Speaker 3: don't understand how privalent it was. I mean, you just
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  Speaker 3: smoked everywhere, You smoked your ass.
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  Speaker 2: That sounds crazy nowadays, you smoke down an airplane.
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  Speaker 1: Yeah, well, I mean I think I'm old enough to remember,
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  Speaker 1: you know, smoking in restaurants, and that is sort of
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  Speaker 1: I think I can't remember when that was outlawed here.
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  Speaker 1: It might have been two thousand and five, I'm guessing
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  Speaker 1: I don't know, but around that.
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  Speaker 2: Yeah, the snapper room never really worked in the restaurant.
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  Speaker 1: No, people sort of forgot that smoke actually travels through
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  Speaker 1: the air. It doesn't just stop when it ring. It
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  Speaker 1: sees a stop sign and goes Actually, no, I won't
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  Speaker 1: travel across there. It doesn't work like that.
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  Speaker 3: And it's see Everett Coop was the first sergeant that
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  Speaker 3: did the pull through on infants. When I was young,
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  Speaker 3: the pull through was being done on two and three
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  Speaker 3: year old tadlers.
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  Speaker 2: So I don't remember any of it. Adult.
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  Speaker 3: My first memory is hiding from my mom, so I
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  Speaker 3: didn't have to have a suppository.
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  Speaker 4: Well you know that's my first memory. Well, yeah, that's
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  Speaker 4: what a first memory time. But yeah, I mean, it
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  Speaker 4: just just sounds like the most amazing man. Just somebody
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  Speaker 4: who sounds like way ahead of his time.
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  Speaker 2: I guess, yes, yes, and a good man, just a
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  Speaker 2: good man.
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  Speaker 1: But that must have been incredibly comforting for your parents
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  Speaker 1: to have somebody there who not only was, you know,
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  Speaker 1: very intelligent, but also would be so adaptable and be
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  Speaker 1: able to sort of talk to everybody in a way
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  Speaker 1: that made them feel comfortable.
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  Speaker 3: Yeah, and and he didn't back then they like, I
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  Speaker 3: don't know what surgery I had. I know that the
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  Speaker 3: surgery that they did before mine left male soul and
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  Speaker 3: impet it and my surgery had only been being done
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  Speaker 3: a couple of years. Wow, knew that, but they didn't
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  Speaker 3: give you little light names. They didn't tell you whether
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  Speaker 3: it was long or short sect. None of them terms
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  Speaker 3: were used.
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  Speaker 2: With my mom at all.
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  Speaker 1: No, but again that.
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  Speaker 3: What they told them is what they were going to
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  Speaker 3: do and how they were going to fix her baby,
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  Speaker 3: and that was all she cared about.
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  Speaker 1: But I guess that is at the time, that is
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  Speaker 1: all the tilers or you do care about. But we
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  Speaker 1: were talking about in terms of long and short segment
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  Speaker 1: because you're unsure as to which one you have prep.
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  Speaker 1: I know we were started talking off air about how
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  Speaker 1: that sort of came to be. But I guess for
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  Speaker 1: everybody listening, how are you unsure?
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  Speaker 3: Because that wasn't something that they talked about at all then.
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  Speaker 3: So all I know is how much they took out
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  Speaker 3: between ten and twelve inches of my call. And that's
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  Speaker 3: the only words my mom heard. They didn't use any
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  Speaker 3: of the medical terms with her. They really wanted her
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  Speaker 3: to understand in layman's terms what they were doing for me.
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  Speaker 1: Yeah, definitely, and.
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  Speaker 5: I don't And back then, I don't think the doctors
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  Speaker 5: gave the patient as much information as they do today.
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  Speaker 5: Look back then, you went to the doctor and you
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  Speaker 5: just did what the doctor said. You didn't question the doctor,
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  Speaker 5: You didn't assume that that you could have a bad doctor.
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  Speaker 5: You just trusted your doctor. I know the concept today,
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  Speaker 5: but it was what it was back then.
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  Speaker 1: Yeah, I guess what what they say goes back. Back
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  Speaker 1: back then, it was just a case of my doctors
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  Speaker 1: said this, that's what I'm doing. Yes, Yeah, Whereas nowadays
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  Speaker 1: we're potentially, I mean, there's still a lot of that
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  Speaker 1: and a lot of you know, very very very good
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  Speaker 1: doctors out there, and we just do and take whatever
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  Speaker 1: pills they give us and do whatever they say. But
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  Speaker 1: there's a lot more I guess information around as well.
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  Speaker 1: Because we were obviously talking pre internet days here, very
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  Speaker 1: much prey everything.
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  Speaker 2: I went to the library to look step up.
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  Speaker 1: It will be people.
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  Speaker 2: My daughter never had that joy, not when you've got
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  Speaker 2: a smartphone.
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  Speaker 3: Now, well, she started on the computer. She's twenty seven,
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  Speaker 3: so they weren't quite smart yet. They just were phones.
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  Speaker 1: But definitely definitely Internet being around there as well.
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  Speaker 2: I knew.
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  Speaker 3: I knew when I had her she had to have
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  Speaker 3: computer literacy early. There wasn't an option in today's world.
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  Speaker 3: I knew where it was heating. I had her on
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  Speaker 3: at chill with Disney and Sesame Street apps or software,
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  Speaker 3: so you just that's where I knew we had.
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  Speaker 1: To go absolutely. And then we were talking as well,
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  Speaker 1: a little bit about Mayo Clinic as well. It's just
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  Speaker 1: something i've I have heard of, and you're very positive
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  Speaker 1: about how how they've treated. You would like to talk
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  Speaker 1: a little bit about.
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  Speaker 3: Them, Yes, I had let me start with prior to COVID. Oh, well,
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  Speaker 3: let me let's go way back. I've been going to
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  Speaker 3: Mayo Clinic.
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  Speaker 2: Oh.
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  Speaker 3: I must have been my late twenties, and I went
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  Speaker 3: up there for several things. I've gone up there for
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  Speaker 3: several things throughout the years. But one time I was
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  Speaker 3: up there and I was going through fertility stuff, and
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  Speaker 3: somebody come up along the way and said, well, we've
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  Speaker 3: got a we've got a constipation study going. Would you
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  Speaker 3: be interested in coming back, And we'd like to do
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  Speaker 3: this study on you because I think we might learn
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  Speaker 3: something maybe a little bit more about how your colon works.
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  Speaker 3: And they kind of told me what the study was,
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  Speaker 3: and I kind of did it not gloriously because it
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  Speaker 3: wasn't a fun study. So I spent two full days
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  Speaker 3: doing cleanse. You think a colon asked to be Clint's
• 12:21
  Speaker 3: is difficult, Yeah, do the other one. It's even worth
• 12:24
  Speaker 3: two days of cleanse in hotels with not.
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  Speaker 2: Good toilet paper. Oh yeah.
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  Speaker 3: And then they put tubes up your ear end, not
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  Speaker 3: to wires. So what they were doing for me is
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  Speaker 3: it was an eight hour test, four hours totally on
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  Speaker 3: an empty colon and four hours on a full colon.
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  Speaker 3: So after four hours they gave me a thirty five
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  Speaker 3: hundred calorie shape and I had twenty minutes to get down,
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  Speaker 3: which is you know, a lot of calories. So there
• 13:01
  Speaker 3: weren't that colon to go to work. And so the
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  Speaker 3: next day I go in and there's twenty doctors in
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  Speaker 3: a little bit Examino at Mayo Clinic that sees everything,
• 13:14
  Speaker 3: everything in the world that they see, and the doctor
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  Speaker 3: looks at me. He says, you know, we kind of thought,
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  Speaker 3: well we did this that well, we got in there,
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  Speaker 3: you were just going to have maybe kind of a
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  Speaker 3: sluggish gut. Things were just gonna work kind of slow,
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  Speaker 3: he says. But you know what we found. When the
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  Speaker 3: colon is empty, you have perfect nerve and muscle activity.
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  Speaker 3: When it's full, it does not function properly. Yes, right,
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  Speaker 3: I believe that's changed the direction of some of the
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  Speaker 3: research in Hirschbrunks. I'm not saying it's discounting the DNA stuff,
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  Speaker 3: because that's how you get it, but I think it
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  Speaker 3: definitely could affect how it's treated.
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  Speaker 1: Yeah, that would be a really And And what year
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  Speaker 1: roughly was was this.
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  Speaker 3: I think I was in my mid to late thirties,
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  Speaker 3: so twenty some plus years ago. When I went back
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  Speaker 3: a couple of years later for something, I said, so
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  Speaker 3: did you did you publish a paper and gastrology today
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  Speaker 3: I don't know what gastrology magazines they have or doctor's journals.
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  Speaker 3: That was my joke, And they're like, did they tell
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  Speaker 3: you that they were writing a paper on you.
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  Speaker 2: I says no.
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  Speaker 3: But when you have twenty doctors steering at you in
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  Speaker 3: a little doctor's opposite Man Lenning, they're writing a paper
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  Speaker 3: on you, and they said, yeah, that's pretty good deduction. Yeah.
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  Speaker 1: When when twenty doctors are looking at you, you kind
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  Speaker 1: of yeah, they won't No, I will say, yes, they
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  Speaker 1: want to know something from you.
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  Speaker 2: Yes.
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  Speaker 3: So it was really an interesting, interesting thing for me
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  Speaker 3: to learn.
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  Speaker 2: I don't know what I could do with it.
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  Speaker 3: I'm definitely hoping that it changes the direction of research.
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  Speaker 3: Maybe it'll help us later on manage it through our
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  Speaker 3: adult lives.
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  Speaker 1: Yeah, definitely.
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  Speaker 3: You know, I'm not as lucky as some that just
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  Speaker 3: had the surgeries that never had any problems actor that.
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  Speaker 3: I'm like you, not lots of surgeries under my belt,
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  Speaker 3: and each surgery just makes things worse. It just adds
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  Speaker 3: to the scar tissue and all the other issues that
• 15:44
  Speaker 3: come along with it. Yeah.
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  Speaker 1: No, most definitely. I think it's one of those things
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  Speaker 1: with Hairshbrung's. I think we're talking to so many people
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  Speaker 1: that I have with it is that everybody is different
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  Speaker 1: and that there are some, as you said, who have
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  Speaker 1: had you know, have the pull through. Maybe you have
• 16:04
  Speaker 1: one more. Everything is, you know, as normal as normal
• 16:11
  Speaker 1: can be. But then there've been people I've talked to
• 16:15
  Speaker 1: on here that have had over one hundred surgeries. Oh yeah,
• 16:20
  Speaker 1: so anywhere between sort of two and I think it
• 16:24
  Speaker 1: was about one hundred and forty or something like that.
• 16:26
  Speaker 1: It was, yeah, a lot, a lot of surgeries. And
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  Speaker 1: then you imagine the scar tissue. As you said, you know,
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  Speaker 1: the more operations you have, the more scartish you have,
• 16:37
  Speaker 1: the harder the next operation is going to be in theory.
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  Speaker 1: So yeah, so that that is host springs is different
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  Speaker 1: for everybody. Hence why I think trying to get stories
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  Speaker 1: out there is is for the best in my opinion.
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  Speaker 2: Well, I had four as an four surgeries.
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  Speaker 3: I had an exploratory and elped and by a general surgeon.
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  Speaker 3: They didn't have pediatric surgeons as much as they do today.
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  Speaker 3: He geed my mom a list of things that could
• 17:10
  Speaker 3: be and then I laid in a hospital for three days,
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  Speaker 3: and then my mom came in and threw his heat
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  Speaker 3: fit and said you bring a specialist in here or
• 17:18
  Speaker 3: I'm taking her out right now. And they brought someone
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  Speaker 3: in from Delaware, a pediatrician, and again he said, these
• 17:26
  Speaker 3: are your options, and he had thought I should go
• 17:29
  Speaker 3: to John Hopkins, but my surgeon had gone to school
• 17:32
  Speaker 3: with Coop, so that's we ended up at Philadelphia Children's Hospital.
• 17:37
  Speaker 3: I had the initial colossomy, I had the clostomy pulled
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  Speaker 3: back in, and I got a severe infection, and then
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  Speaker 3: I had to pull through it right about eleven months.
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  Speaker 1: Okay, so for a little bit later than you would
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  Speaker 1: do now necessarily.
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  Speaker 3: Well, most of them waiting to two or three when
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  Speaker 3: I was born. Yes, yes, Hoop was the only one
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  Speaker 3: doing to pull through on infants.
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  Speaker 1: Which, again, as we said, pioneer of his time.
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  Speaker 2: Yes, yes, yes, absolutely.
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  Speaker 3: I was really my mom and dad were really blessed
• 18:15
  Speaker 3: to have good insurance and find really good care for me.
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  Speaker 2: Yeah, because, as I.
• 18:24
  Speaker 3: Had told you previously, you're the first person I've ever
• 18:27
  Speaker 3: spoke to that heard hirsch brns. Besides me, I know
• 18:31
  Speaker 3: that there's one in Rockford. One of the nurses told
• 18:34
  Speaker 3: me that they have another lady in Rockford and she's
• 18:37
  Speaker 3: in the hospital almost every month. Really, they don't tell
• 18:41
  Speaker 3: me why. I can't you know, but she just said,
• 18:44
  Speaker 3: because I said, you know, there's not many of them.
• 18:46
  Speaker 3: She says, well, there's another lady here, and she has
• 18:49
  Speaker 3: a lot more problems than you have. I don't know
• 18:53
  Speaker 3: her age or anything. That's about all I know.
• 18:55
  Speaker 2: We have another lady here.
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  Speaker 3: So yeah, I really kind of about kind of on
• 19:01
  Speaker 3: an island here. Yeah. I felt like I'm in my
• 19:06
  Speaker 3: own friend to mind my own journey, that I don't
• 19:10
  Speaker 3: know where I'm going.
• 19:12
  Speaker 1: I think that's that's pretty normal. And as we've spoken before,
• 19:16
  Speaker 1: you can, as I said, I think in other episodes,
• 19:20
  Speaker 1: I wasn't till I was twenty five until I met
• 19:23
  Speaker 1: somebody else, and that was just purely by chance, because
• 19:27
  Speaker 1: me being a teacher, I was teaching somebody who had
• 19:31
  Speaker 1: hirshbrungs or has hirshbrungs, and that was just purely by chance.
• 19:36
  Speaker 1: And that was kind of one of the reasons of
• 19:37
  Speaker 1: doing this was to try and get you know, try
• 19:41
  Speaker 1: and build a community of sorts. I don't know, there's
• 19:45
  Speaker 1: lots of people you know, do Facebook groups and all sorts,
• 19:48
  Speaker 1: but to try and sort of put all of these
• 19:51
  Speaker 1: really fascinating, interesting, positive stories all together in one place
• 19:58
  Speaker 1: so that I.
• 19:58
  Speaker 3: Really have a mother one time call me with a
• 20:01
  Speaker 3: boy and she wanted to know if he.
• 20:05
  Speaker 2: If he was going to have a normal light.
• 20:11
  Speaker 3: I trusting, Okay, they lose you Nope, okay, but I
• 20:19
  Speaker 3: never I never spoke with her. I just spoke with
• 20:21
  Speaker 3: her one time. I let her know I have a
• 20:24
  Speaker 3: normal light. There's some management with it.
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  Speaker 2: Yeah, but never.
• 20:31
  Speaker 3: You know, That's about all I've had up until just
• 20:34
  Speaker 3: me having you DM me fantastic.
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  Speaker 1: Well, Well, if anybody ever wants to know more, there
• 20:42
  Speaker 1: are forty two, I think after this goes out, forty
• 20:46
  Speaker 1: two episodes of people with hirshbruings on the podcast. So
• 20:49
  Speaker 1: there's many, many hours of the of listening to be told,
• 20:53
  Speaker 1: if anybody wants to do that. Another thing that we
• 20:56
  Speaker 1: were going to talk about that you were very keen
• 20:58
  Speaker 1: to talk about with something that's sort of going on
• 21:02
  Speaker 1: about now with you with COVID, and you have long Covid.
• 21:08
  Speaker 1: At the moment, you are the first person certainly i've
• 21:12
  Speaker 1: met with both Hirshprungs and Long COVID. I think, as
• 21:16
  Speaker 1: we were talking a little bit off air, was still
• 21:18
  Speaker 1: very much in the sort of finding out phase when
• 21:22
  Speaker 1: it comes to COVID and I personally I don't I
• 21:26
  Speaker 1: don't think we'll know a great deal for a long
• 21:29
  Speaker 1: time yet. But there might be people listening at the
• 21:32
  Speaker 1: moment with long COVID. What how has your life changed
• 21:39
  Speaker 1: or adapted since being diagnosed?
• 21:42
  Speaker 2: Well, first let.
• 21:43
  Speaker 3: Me start before real quickly, before I was diagnosed. Before
• 21:47
  Speaker 3: I was diagnosed, I had decided that in my very
• 21:51
  Speaker 3: early fifties, I wanted to go into sixty better than
• 21:54
  Speaker 3: my fifties.
• 21:56
  Speaker 2: So I went on a health journey.
• 21:58
  Speaker 3: I went on trying to eat better, and I got
• 22:02
  Speaker 3: into exercising. For the first time in my life. I
• 22:05
  Speaker 3: really got exercise. I was jogging five hours or five
• 22:10
  Speaker 3: miles a day, five to six days.
• 22:13
  Speaker 2: A week in about an hour.
• 22:16
  Speaker 3: Wow.
• 22:17
  Speaker 2: So I was really feeling great.
• 22:20
  Speaker 3: And then I got COVID in September of twenty twenty two.
• 22:27
  Speaker 3: And when I went back and I had I would
• 22:29
  Speaker 3: tell you I almost had COVID, like I barely. I
• 22:32
  Speaker 3: had some cold symptoms. I had a nose that ran
• 22:37
  Speaker 3: for a week, you know, nothing major. And then I
• 22:41
  Speaker 3: went back to exercising. And when I went back to exercising,
• 22:46
  Speaker 3: I couldn't breathe and my heart is just trying to
• 22:48
  Speaker 3: pound out of my chest. Now this is just a
• 22:51
  Speaker 3: couple of weeks for me walking all through the city
• 22:55
  Speaker 3: of Seattle and my family tagging behind me, and I
• 23:00
  Speaker 3: could not exercise, and then we went down the road
• 23:04
  Speaker 3: of COVID. The one thing that's the only be Fictel
• 23:08
  Speaker 3: on COVID is it's been much easier to handle my constipation.
• 23:13
  Speaker 3: I'm not having much constipation. However, that's not my norm.
• 23:19
  Speaker 3: And even at Mayo Clinic, the doctor said, yeah, that's
• 23:23
  Speaker 3: not your norm. If you were probably normal in that
• 23:26
  Speaker 3: area right now, you'd be living with diarrhea. Right.
• 23:31
  Speaker 2: So the fatigue, the malaise, all of.
• 23:34
  Speaker 3: That's really just overwhelming, and personally, I'm not sure nobody
• 23:41
  Speaker 3: can tell me.
• 23:42
  Speaker 2: Nobody knows.
• 23:43
  Speaker 3: I question if it's not because I have COVID, when
• 23:47
  Speaker 3: you have COVID or not COVID, when you have Erstbron's.
• 23:51
  Speaker 3: I question how well am I processing my nutrition? And
• 23:57
  Speaker 3: if I'm not crushing my nutrition correctly, then I have
• 24:00
  Speaker 3: some sort of immunity issues.
• 24:03
  Speaker 2: I would think.
• 24:05
  Speaker 3: Now, this is just my opinion, and I'm not really sure,
• 24:09
  Speaker 3: but it definitely makes me questioned.
• 24:12
  Speaker 1: You know all of that absolutely not and I think,
• 24:16
  Speaker 1: you know, again, I don't know. I don't think there's
• 24:19
  Speaker 1: anybody who there's anybody who knows, because there's there's obviously
• 24:24
  Speaker 1: not been any tests or not been a lot of
• 24:27
  Speaker 1: testing on it. I mean, firstly, you've got to find
• 24:29
  Speaker 1: someone with COVID, then you've got to find someone with hirshprungs.
• 24:31
  Speaker 1: I can't imagine there are many people in the world
• 24:34
  Speaker 1: who have both. But I mean, your your theory does
• 24:41
  Speaker 1: in terms of being an autoimmune disease as such as
• 24:47
  Speaker 1: COVID and you know the condition that hirshprunks is as well,
• 24:54
  Speaker 1: there's certainly a possibility. I don't think anyone can anyone
• 24:57
  Speaker 1: could say for sure, as you said, but having COVID
• 25:02
  Speaker 1: on hirshbruns is a bit of a double whammy.
• 25:04
  Speaker 3: It is, except that I'm hearing easier trying to callote
• 25:08
  Speaker 3: the bathroom.
• 25:09
  Speaker 2: But as the doctor Mao said that that's not my norm.
• 25:16
  Speaker 3: No, I should be having to manage constipation, which is
• 25:20
  Speaker 3: most of what I've had to do most of my
• 25:22
  Speaker 3: life is manage constipation, and that can be challenging.
• 25:26
  Speaker 1: Really.
• 25:28
  Speaker 3: You know, sometimes people forget that just because we had
• 25:32
  Speaker 3: it fixed does not mean we work properly. No, no,
• 25:38
  Speaker 3: And I'm totally done hearing doctor say, well you had
• 25:41
  Speaker 3: that fixed.
• 25:42
  Speaker 2: Nope, that no wrong answer. Because it's not fixed. Maos
• 25:47
  Speaker 2: prove that.
• 25:48
  Speaker 3: No.
• 25:49
  Speaker 1: And I think that especially when people haven't heard of hirshprunks,
• 25:54
  Speaker 1: they can potentially go, oh, well you've had the pull through.
• 25:57
  Speaker 1: Everything's now fine, and it doesn't again. As we said before,
• 26:01
  Speaker 1: some people that can be sort of true. For a
• 26:07
  Speaker 1: lot of us, me included, it is not. And things
• 26:12
  Speaker 1: it can and it can. It can be sort of
• 26:14
  Speaker 1: a you know, things happened daily that are challenging a
• 26:21
  Speaker 1: weekly or whatever it might be.
• 26:24
  Speaker 3: I had some of that, and then I had no
• 26:26
  Speaker 3: like when I travel always bad. The last colostomy or
• 26:31
  Speaker 3: not classic, the last colonnascopy I had, it got me
• 26:36
  Speaker 3: so stewed up.
• 26:36
  Speaker 2: It took me.
• 26:37
  Speaker 3: I take six or eight weeks to get back on
• 26:39
  Speaker 3: some type of schedule at all. Wow, four days after
• 26:44
  Speaker 3: the colonoscopy, I'm constipated again.
• 26:49
  Speaker 2: Yeah, that's how can we be concipated already?
• 26:53
  Speaker 1: That doesn't sound Yeah, that doesn't sound quote unquote normal.
• 26:59
  Speaker 2: Well it's not, but there we are.
• 27:02
  Speaker 1: But we were supposed to speak. You're fair. I don't
• 27:05
  Speaker 1: think any of us who have hirshbrungs are are normal.
• 27:09
  Speaker 3: No, I don't either. I think that some have it
• 27:13
  Speaker 3: a lot worse than others. I've read a couple of
• 27:16
  Speaker 3: stories of people going back to you know, some form
• 27:21
  Speaker 3: of classroomy or stormer whatever. All I've ever thought about
• 27:26
  Speaker 3: is what do you got to be going through actually
• 27:28
  Speaker 3: sign up for that?
• 27:31
  Speaker 2: Yeah?
• 27:32
  Speaker 1: Yeah, most definitely.
• 27:33
  Speaker 2: I mean, you know you'd have to do. That's a
• 27:38
  Speaker 2: hard sell for me.
• 27:39
  Speaker 1: Yeah, yeah, I I uh, yeah, I understand that, most definitely.
• 27:46
  Speaker 1: I think as well, it's something else to touch on
• 27:50
  Speaker 1: in terms of your life, is hirshprungs. How have you seen,
• 27:58
  Speaker 1: I guess, the ways in which people are treated change
• 28:02
  Speaker 1: over the years.
• 28:06
  Speaker 2: What do you mean by that?
• 28:07
  Speaker 1: Well, as in as in sort of the way because
• 28:14
  Speaker 1: we were talking a little bit about the pull through
• 28:16
  Speaker 1: and the scars, the scars being larger than they are now,
• 28:20
  Speaker 1: is there anything that sort of stands out where you think, actually,
• 28:25
  Speaker 1: this is done differently sort of over the years. Because
• 28:29
  Speaker 1: obviously you have more experience than than a lot of
• 28:31
  Speaker 1: my guess with with hirshpruns.
• 28:38
  Speaker 3: I don't know what they're doing today with all of that,
• 28:43
  Speaker 3: because I'm already so messed up and lumpy and bumpy
• 28:47
  Speaker 3: and so full of scars. Every just they typically a
• 28:52
  Speaker 3: lot of times she reopened old scars. Okay, so I
• 28:57
  Speaker 3: don't ever seen much different. Now I've had some doctors
• 29:02
  Speaker 3: be very creative with me. I don't know if you're
• 29:05
  Speaker 3: aware of kirsh Brunt's patients tend to have very weak pelvic.
• 29:10
  Speaker 1: Floors, makes sense.
• 29:13
  Speaker 3: So very early on I had some I was in
• 29:16
  Speaker 3: my thirty late thirties with having some incontinence issues and
• 29:21
  Speaker 3: I had never carried a baby. And they told me
• 29:26
  Speaker 3: again at Mayo that patients with hirsch Brunts, because of
• 29:30
  Speaker 3: all the surgeries they had in the pelvic region, they
• 29:34
  Speaker 3: tend to have a wheat velvet floor. And then what
• 29:38
  Speaker 3: they did is they did a highbred of the old
• 29:43
  Speaker 3: bladder slang and the new one where.
• 29:45
  Speaker 2: They did vaginally.
• 29:47
  Speaker 3: Okay, yeah, so I had a little bitty like oneed
• 29:50
  Speaker 3: scar and then I had stitches come out of my
• 29:53
  Speaker 3: vagina right, and that was very successful for me. But
• 29:58
  Speaker 3: it was really shocked for me to start having incontinence
• 30:02
  Speaker 3: issues and not have carried a child normally.
• 30:06
  Speaker 2: You know, it's women carrying babies.
• 30:09
  Speaker 1: Absolutely absolutely, but I think that definitely certainly from again
• 30:14
  Speaker 1: from people I've spoken to. You know, we're talking a
• 30:16
  Speaker 1: little bit about scars, and about how the scars across
• 30:21
  Speaker 1: the abdomen with the pulsry goes through just doesn't. It
• 30:24
  Speaker 1: won't look the same anymore, even from sort of from
• 30:28
  Speaker 1: when I had mine to when people are who are
• 30:31
  Speaker 1: having them now, they look sort of completely different and
• 30:34
  Speaker 1: in a lot of cases I think a lot smaller.
• 30:37
  Speaker 3: Well, mine or my stomach's just a mess. It was
• 30:40
  Speaker 3: definitely difficult for me through my teen years a gym
• 30:46
  Speaker 3: class where you've changed in the locker room as an adult. Overall,
• 30:50
  Speaker 3: I think I've just handled it well. It's saved my life.
• 30:54
  Speaker 3: I wouldn't be here without them. They're who I am.
• 30:57
  Speaker 3: And if I don't go through life with some scars,
• 31:01
  Speaker 3: I'm probably had a pretty boring life.
• 31:03
  Speaker 1: Ah ha, Yes, yes, I think.
• 31:06
  Speaker 2: No, I got other scars.
• 31:07
  Speaker 3: I got a monkey bite star, and you know I
• 31:09
  Speaker 3: got other scars to tell stories.
• 31:13
  Speaker 2: That's true.
• 31:14
  Speaker 1: Every scar tells a story, it does.
• 31:17
  Speaker 2: Some of them are good, some of them are paidful.
• 31:19
  Speaker 1: Yes, yes, most definitely, But I think, yeah, a lot
• 31:22
  Speaker 1: of us in terms of hirsprungs, we tend to wear
• 31:25
  Speaker 1: our scars potentially more than most.
• 31:30
  Speaker 2: Yes.
• 31:30
  Speaker 3: Probably the other thing I did want to cover really
• 31:34
  Speaker 3: quickly if you don't mind, absolutely is I want to
• 31:38
  Speaker 3: talk about the parents of the upcoming kersh Brons babies
• 31:43
  Speaker 3: coming along my mom did. I've got a really fantastic mom.
• 31:48
  Speaker 3: But my mom did a few things really right for
• 31:52
  Speaker 3: me very early in my life. Some decisions she made.
• 31:56
  Speaker 3: One of them was she was never going to let
• 31:59
  Speaker 3: anyone treat me like a sick baby, because I was
• 32:03
  Speaker 3: going to grow up and I was going to be normal.
• 32:07
  Speaker 3: She didn't want people coming along in babying me. She
• 32:11
  Speaker 3: wanted to treat me age appropriate, and that was really
• 32:15
  Speaker 3: a blessing for me. I didn't know until much later
• 32:20
  Speaker 3: in my life what a special place I had in
• 32:23
  Speaker 3: extended family's lives. But as a child, I just thought
• 32:27
  Speaker 3: I was like to everyone else. In fact, I didn't
• 32:30
  Speaker 3: know every other baby didn't have to have animals and suppositories, right,
• 32:37
  Speaker 3: Why would I know any different. Secondly, she never told
• 32:43
  Speaker 3: me that she had concerns with me sexually because of
• 32:49
  Speaker 3: the boy The boys the babies prior to my generation
• 32:54
  Speaker 3: were being left impotent. She was always worried about that.
• 32:59
  Speaker 3: So after I had gone through fertility issues, which is
• 33:03
  Speaker 3: the other thing she didn't talk to me about, late
• 33:06
  Speaker 3: in my early thirties. She asked me about it, and
• 33:09
  Speaker 3: I says, well, of course I have orgasms, and then
• 33:12
  Speaker 3: she told me why she had always been concerned. And
• 33:17
  Speaker 3: then same thing the day the.
• 33:21
  Speaker 2: Night I had the.
• 33:24
  Speaker 3: Or the aclostomy poland and I got that severe infection.
• 33:27
  Speaker 3: That next morning, she had a conversation with my dad
• 33:32
  Speaker 3: about I would never have babies, But she never told
• 33:36
  Speaker 3: me that. She let me do it organically and then
• 33:40
  Speaker 3: were really good things for me. And She's always known
• 33:46
  Speaker 3: that I would have to manage this. This wasn't just
• 33:49
  Speaker 3: a one and done, This wasn't my appendix ruptury. No,
• 33:54
  Speaker 3: this is a life long thing. She never made a
• 33:58
  Speaker 3: deal of it, but there was. She was always there
• 34:01
  Speaker 3: to understand when I did need to I had I
• 34:06
  Speaker 3: was pretty normal through my childhood. Then I had it
• 34:09
  Speaker 3: over here, insisted eighteen and when they got in there,
• 34:13
  Speaker 3: my bowels had wrapped around and grown to my uterus,
• 34:18
  Speaker 3: which would have been really dangerous had.
• 34:20
  Speaker 2: I become pregnant.
• 34:22
  Speaker 3: After that surgery, I really started having to manage constipation
• 34:26
  Speaker 3: more than I ever had in my life. And since then,
• 34:30
  Speaker 3: the more surgeries I've had, the more issues that have arrived,
• 34:34
  Speaker 3: including you know, I have obstructions. I haven't had one
• 34:38
  Speaker 3: since COVID, but there for a while I was having
• 34:40
  Speaker 3: pretty regular obstructions. I called the doctor going, I'm going
• 34:44
  Speaker 3: on clear liquids again, and I would do clear liquids
• 34:48
  Speaker 3: for a week because I don't want to let them
• 34:50
  Speaker 3: open me. Yep, that's just going to create more stuff.
• 34:55
  Speaker 3: And every surgery I've had really has been needed. I didn't,
• 35:01
  Speaker 3: you know, I did look at one point in my
• 35:03
  Speaker 3: twenties about having my stomach you know, fixed, but it
• 35:06
  Speaker 3: was never really gonna be fixed.
• 35:10
  Speaker 1: What you mean by fixed.
• 35:13
  Speaker 2: Flat, you know, not have it so scarry.
• 35:18
  Speaker 1: Okay, And one more thing you want to mention.
• 35:22
  Speaker 2: Yes, my mom.
• 35:30
  Speaker 3: She never looked at this as a job or as
• 35:34
  Speaker 3: dicky or as you know, sticking her finger up to
• 35:37
  Speaker 3: dilate my record. None of that stuff bothered her. She
• 35:41
  Speaker 3: always felt, this is what I gotta do to make
• 35:45
  Speaker 3: my baby better. She never once looked at how difficult
• 35:50
  Speaker 3: it was for her, or how much more work I
• 35:53
  Speaker 3: was than what an other baby might be. She always
• 35:58
  Speaker 3: just thought about how I'm going to get my baby better,
• 36:02
  Speaker 3: and that was really good and positive for me.
• 36:06
  Speaker 2: Yeah, even into my adulthood.
• 36:09
  Speaker 1: Absolutely, and then as There's one thing that there's sort
• 36:13
  Speaker 1: of a constant throughout the episodes on this podcast when
• 36:16
  Speaker 1: I talk to a lot of mothers is that I
• 36:21
  Speaker 1: can't thank them enough really for what they do. And
• 36:26
  Speaker 1: there's so many, but so many mothers that I talk
• 36:29
  Speaker 1: to they just would do, would do anything, and and
• 36:36
  Speaker 1: just such an important role that they play. I mean,
• 36:41
  Speaker 1: all mothers play an important role. I think we know that,
• 36:45
  Speaker 1: but especially when you have a child who is I
• 36:50
  Speaker 1: don't want to say is ill or is sick or whatever,
• 36:54
  Speaker 1: although that might well be the case, but it is
• 36:57
  Speaker 1: certainly going to go through more issues in your average child.
• 37:01
  Speaker 3: I guess, yes, yes, like I had a ton of
• 37:06
  Speaker 3: ear infections, whereas as a direct of dear infections.
• 37:10
  Speaker 2: We all have more stuff than people who don't have
• 37:14
  Speaker 2: a response that we do that we do just have
• 37:18
  Speaker 2: more stuff.
• 37:19
  Speaker 1: We do. That's that's absolutely true. But it has been
• 37:24
  Speaker 1: it has been a pleasure having you on. Thank you
• 37:26
  Speaker 1: so much for sharing a story, for sharing a unique
• 37:31
  Speaker 1: insight into into what life life was like for people
• 37:36
  Speaker 1: who haven't haven't experienced hirshprungs in the sixties, But thank
• 37:41
  Speaker 1: you ever so much for coming on. It's been a
• 37:44
  Speaker 1: it's been a real pleasure having you and chatting to you.
• 37:46
  Speaker 3: Thank you, You're welcome. It's been an absolute joy.
• 37:53
  Speaker 1: Thank you for listening to the podcast. Find us on
• 37:56
  Speaker 1: Instagram Tom's Underscore, Hirshprung's Underscore podcast. Listen to previous episodes
• 38:02
  Speaker 1: on Spotify by searching Tom's Hirschbrun's podcast
• 38:23
  Speaker 3: Hmm